Mother Jones article: Desperate Patients Are Shelling Out Thousands for a Long Covid Cure. Is It for Real?

Desperate Patients Are Shelling Out Thousands for a Long Covid Cure. Is It for Real?
Two doctors, their unusual treatment program, and the “wild bisons” who swear by it.
by Kiera Butler January 3, 2022

https://www.motherjones.com/politic...ousands-for-a-long-covid-cure-is-it-for-real/

This is a very long, and concerning, article that appeared yesterday.

It discusses a topic that many here will know well: clinics capitalising on the large numbers of desperate patients, selling cures and hope where none exists (yet).

What's troubling in this case is that the clinic in question has been set up by a well-known virologist, Dr Bruce Patterson, who was a former Director of Virology at Stanford and has previously done key research into HIV pathogenesis.

 

The first thing I noticed after reading the article, and then looking at Patterson's twitter feed, is that most of the positive endorsements he retweets are from accounts that were only set up a couple of months ago (or resurrected (bought?) older accounts with deleted timelines) that have suspiciously few followers/followees. Not a good look!

It might turn out that he is on to something. But you don't get there by exploiting and experimenting on vulnerable patients. There is basic science that has to be done first, and it doesn't look as if he is doing that. Very sad.

And of course he is in competition with the likes of Mayo Clinic, who are still offering exercise as a therapy (allegedly).

 

But the article really implies that this is not the case.

 

Thanks for sharing @Lucibee I will add it to my list looks very interesting.

I don’t have the ability to read this article now, so below comments not specific to this.

It feels to me from a stand point of mostly unintentional observation just stumbling onto bits and pieces of information, that the cure industry is in a period of hyper acceleration.

Stuff that would cycle round every decade or so targeted to people with un or under treated illnesses, just jumping out from
behind every corner now.

The landscape in creation is nightmarish.

My hope is that quietly something good is also unfolding.

 

The author has done a twitter thread summary of the article:

https://twitter.com/user/status/1478030677207564290

 

Oh wow. That hits hard. Sound from this like some really solid journalism?

 

My M.E doctor told me this 20 years ago when I shared the new pet theory that was circulating about hypercoagulation and M.E. He told me that they are using desperate patients as their 'guinea pigs' and making money from them.

 

This is the problem. There may well be elements that may be true, but once-promising areas of research have been serially trashed by rogue chancers seeking to exploit them for easy cash. That no-one will go near those areas for fear of association with charlatanery is the dreadful consequence.

fwiw there is probably quite a lot to be discovered in the hypercoagulation research, but I don't think it will be a fix in and of itself. It's likely a downstream effect of stuff going awry far upstream.

 

I haven't read it yet, but I know the reporter and she's very smart.

 

And unfortunately, Solve ME recently hosted Patterson on a webinar. I feel this may have legitimized him to patients.

 

It may be that one of the main benefits of the rise in pv illness following covid for pwME is that there will be more interest and so more scrutiny of doctors, clinics and their methods. (Which imo is a BIG deal because I feel there's a LOT of exploitation in this area. Rooting out those who exploit patients for profit would be a huge positive.)

Imo, the people who do make the big breakthroughs will not be the people who are seeking to be superheroes and all over social media but those who are just quietly, conscientiously working away. In fact, I think it's unlikely to be one small group of people but a slow accumulation of knowledge over quite a long time.

 

Why wasn't Dr. Bruce Patterson who went on to a residency in Pathology (focusing on viral pathogenesis) and HIV interested in M.E years ago?

 

[my bold]

Hmmm ... well that would seem to bode well then .

 

I'm sure they will be able to fit it within the requirements of "evidence based medicine".

 

There's a thread on Patterson here: https://s4me.info/threads/usa-incel...ng-cytokine-tests-to-covid-longhaulers.20434/

Wouldn't trust him an inch.

 

https://twitter.com/user/status/1478420032128536576

 

I hope the medical board that renews a doctor’s license will take a close look at Dr. Patterson.

 

From the article:

A Stanford bioethicist, Hank Greely, says
" You’re selling a test that you’ve got no good evidence works, and then you’re using it to prescribe a drug that you’ve got no good evidence works? To me, safety and efficacy are profoundly ethical questions.” and, “The red flags are in full force on this one.”

" Bruce Patterson’s medical pedigree is impressive... he made a key discovery in HIV research... became director of clinical virology and co-director of the AIDS Research Center at Stanford... pioneering technologies and findings have contributed to advances in detection, prognosis, and treatment of patients infected with HIV,” a Stanford press release about his appointment boasted... "

Dr Patterson may have an impressive pedigree, but now he seems to have sunk into the "dark side of the force " i.e. quackery: abusing people's vulnerability for his own benefit, with his collaborater Dr. Ram Yogendra. And, it is never without risk (the article mentions the suicide of a woman perhaps following one of their "treatments"). It's sad, a lot of "déjà vu", unfortunately.

 

Solid article, I think it's pretty fair and I am glad it is out there.

I guess I am an outlier. I have paid for their test, even paid for a consult, and I am currently on maraviroc/pravastatin. I don't really think it will help me, but my evaluation of the cost/benefit of trying it out for a month made me figure I'd just go for it.

I also agree with the article -- they should absolutely not be promoting this theory as if it's the truth, or anything beyond speculation with some very preliminary data behind it.

But I also don't feel taken advantage of, not in the slightest... probably because I've been around the block a few (dozen) times and know exactly what I'm getting into? I agree, it is a problem for those with long covid who are naive to this.


p.s. I don't want to share too much since this is a public thread, but I will say that I am certainly not in the incelldx "fan group"

 

This person has a point -- maybe the author should have tried interviewing more patients. A lot of focus on "Owen".

https://twitter.com/user/status/1478167238653845509